1. Evaluation of a of a Statewide Early Hearing Detection and Intervention Program Karen M. Ditty, M.S.,CCC-A National Center for Hearing Assessment and Management Utah State University www.infanthearing.org

2. Data Collection (June / July 2002) Questionnaires completed by : 35 of 42 hospitals 104 physicians 208 parents of babies who: passed the inpatient screen (n=104) referred on inpatient and passed outpatient (n=83) referred on both inpatient and outpatient (n=24) Analysis of data from the states EHDI Data Management Program for 1999, 2000, and 1 st 6 months of 2001 Site visits to 4 hospitals

3. Evaluation Results for…. Universal Newborn Hearing Screening Appropriate and Timely Diagnosis of the Hearing Loss Prompt Enrollment in Appropriate Early Intervention A Medical Home for all Newborns Culturally Competent Family Support Effective Tracking and Follow-up

4. Newborn Hearing Screening All 42 hospitals in the state have universal newborn hearing screening programs. Hospitals screen 98% of all live births (mostly by health care assistants, LPNs, or nurses) Only about 88% of babies pass screening prior to hospital discharge (little improvement in last 3 years) 26% of physicians think that less than 60% of babies in the state are screened.

5. Newborn Hearing Screening (continued) Only 54% of newborn hearing screening coordinators have some time dedicated specifically to the hearing screening program. Less than 70% of babies who need outpatient screens complete them (little improvement in last 3 years)

6. Efficiency of Early Hearing Detection and Intervention 1999 2000 2001(6 mos) (n=43,547) (n=46,771) (n=23,307) Inpatient Refer Rates (state average) 85.2%85.5%87.5% 10 most effective hospitals 92.8%93.4%93.7% 10 least effective hospitals 70.7%63.4%74.4% Outpatient completion (state average) 70.1%67.1%68.3% 10 most effective hospitals 94.5%95.9%94.7% 10 least effective hospitals 45.3%52.9%58.08% Reported Completion of Diagnostic 133 of 357 165 of 380 41 of 110* Evaluations (state average) 37.3%43.4%40% % of babies who complete Diagnostic 33 of 133 65 of 165 12 of 41* Eval & have permanent hearing loss 24.8%39.4%29.3% Number of babies still in process 224 215 69 *only 3 months worth of data

7. Diagnostic Evaluations Should be Completed by 3 Months of Age In an office visit with a baby who didnt pass the final screening test, 90% of physicians say they refer for a diagnostic evaluation ASAP. 23% of physicians think that definitive hearing tests cant be done until a baby is 3 or more months old.

8. Complete Diagnostic Evaluations by 3 Months of Age (continued) Many programs (20%) do no follow-up after referring to the physician For babies who do not pass the final screening test, only about half of parents are given names of audiologists or referred to their physician.

9. Enrolled in Appropriate Intervention by 6 Months of Age Only 63% of programs keep track of whether babies with hearing loss are enrolled in Early Intervention programs Many program coordinators dont know what EI options are available in their area 47% of physicians dont realize babies can be fit with hearing aids before 6 months of age

10. All Newborns Should Have a Medical Home All physicians were aware that their hospital had a UNHS program and thought it was valuable Most program coordinators report that they know who the primary care physician is for babies who do not pass Only 37% of physicians think their hospital does a good job of educating physicians about EHDI programs and most would like more information

11. Babies Diagnosed with Hearing Loss Are Not Referred to Some Medical Specialists As Often As Desired Assume a newborn for whom you are caring is diagnosed with a moderate to profound bilateral hearing loss. If no other indications are present, would you refer the baby for a(n): Always or Often Ophthalmological evaluation24% Genetic evaluation38% Otolaryngological evaluation94%

12. Families Should be Provided with Culturally Competent Services Over 90% of parents glad hearing screening is done at their hospital, and confident the hearing tests were correct Families who remember receiving written information about the EHDI program, think it is understandable, attractive, and the right amount of detail 95%+ of parents whose baby didnt pass, reported they knew what to do next 85% of parents who had questions reported that they were answered well

13. After all hearing tests were completed, how did you feel? Strongly Agree or Agree Worried about my babys hearing 11% Confused about the results of screening tests 10% Glad hearing screening is done at this hospital91% Confident the hearing tests were correct 91% Frustrated by how long it took to get results13% Happy with the professional way screening was done86% Confident about what I needed to do next 88%

14. If the analysis is limited to those whose babies did not pass the inpatient or outpatient screen After all hearing tests were completed, how did you feel? Strongly Agree or Agree total group subgroup Worried about my babys hearing 11%24% Confused about the results of screening tests 10%24% Glad hearing screening is done at this hospital91%70% Confident the hearing tests were correct 91%70% Frustrated by how long it took to get results13%28% Happy with the professional way screening was done86%76% Confident about what I needed to do next 88%56%

15. Families Should be Provided with Culturally Competent Services (continued) Only 49% remember being given written information about newborn hearing screening- - - many would have liked more Over half didnt know their hospital had a newborn hearing screening program before they checked in Many programs dont have materials in Spanish despite large Spanish speaking population Parents whose babies require diagnostic evaluations: –34% say paying for the tests was difficult –32% agree the experience was scary and confusing –17% say they needed help, but didnt know where to get it

16. Effective Tracking and Follow-up Most people think the states Data Management Program is very useful, but many are unaware of valuable features 25% to 50% of hospitals dont check to see if babies who dont pass screening receive a diagnostic evaluation. Program coordinators report that 85% of babies come back for outpatient screening, but only 68% really do

17. Support from State Department of Health Past help has been viewed as extremely postive, especially: –Promoting UNHS –Developing educational materials –Communicating with parents and physicians –Connecting referred babies to diagnostic evaluations Hospitals would like more assistance –Financing the cost of screening –Data management and tracking

18. Conclusions Much progress has been made and a solid foundation is in place for developing an exemplary program There are excellent models in the state for each component of EHDI, but only a few programs have put it all together Parents and physicians are very supportive of EHDI programs All stakeholders need better information about resources, benefits and rational for EHDI programs High refer rates and many babies lost for tracking and follow- up are serious problems which need to be resolved

19. Recommendations Hospitals should: Be more proactive about following up with babies who do not pass the inpatient and/or outpatient screening Reduce inpatient refer rates Substantially improve outpatient completion rates Substantially improve reporting and completion rates for diagnostic evaluations

20. Recommendations State Department of Health should take the lead in: Continuing to Prepare educational materials for parents (English and Spanish) and physicians and make them available to hospital programs Helping hospitals implement the XYZ Data Management Program and assisting with follow-up Continuing the excellent training and support they have provided to hospitals

21. Recommendations Physicians need to: Be better informed about the benefits and capabilities of early hearing detection and intervention Be more involved in making sure parents get the follow-up and services they need Do a better job of referring babies with diagnosed hearing loss for opthamalogical and genetic evaluations.

22. I am a great believer in luck, and I find that the harder I work, the more I have of it. ---Thomas Jefferson